something to be thankful for?

many of you have been keeping close tabs on the "meg vs. dr. carl" drama these days, so hopefully you won't be disappointed with the final outcome. (or maybe you will, depending on if you had been holding out for some slim percentage of a miracle cure or an easily fixable condition. i guess that would separate the jaded, bitter realists from the bleary eyed romantic optimists.) the highly debated answer is... yes, i still have MS. (the statement is already becoming a family joke around the house.) i have to admit, i breathed a small sigh of relief when dr. carl finally got around to confirming the diagnosis. and no, i'm not a sick hypochondriac, just bear with me.

once the follow-up appointment was officially scheduled (which was a process in and of itself, i won't bore you with the details), dad offered to chauffeur and accompany me for the afternoon. i immediately took him up on the offer- not only has mom sat through her fair share of boring waiting rooms and tense doctor appointments (we're talking HOURS of her life she will never get back), but he has us both beat when it comes to keeping his cool in emotional situations. i've been dreading this appointment. dreading in the same way i would wait for my college acceptance results. dreading in the same way i would slam my alarm clock down at 6am on monday mornings. dreading in the same way i avoided Target boy in my apartment complex. i think you get the point.

and i wasn't sure how to prepare- i mean, i've given this "spcheal" (how do you spell "spcheal"? is it an official word?) countless times. but usually off the cuff, and especially not to a doctor that seemed to be biased against my condition. how was i going to remember everything? what if i left out that one time my right ear twitched more than my right? or how i can't pronounce the word "brewery" correctly? (it's a hard word!) in the end, i wound up paging through my binders of medical records (over 250 pages- i know that b/c apparently dr. carl counted them, as he told me more than once during the appointment), almost like i was studying for a midterm. i even wrote down a "timeline" of the past 4 years, so i could be prepared when he asked which things started when, etc.


random insert: strangely enough, i'm listening to a song on Yahoo! jukebox that has a refrain of "punish the monkey" running over and over and over and over... just a small behind-the-scenes peek for you.

so finally the dreaded tuesday arrives, and i'm napping peacefully on the winding road to danville (i am a fantastic car sleeper. maybe i need to go down to the garage when i'm riddle with insomnia. like tonight.) i've been battling some major fatigue lately. it never seems to get better! by the afternoon, my walking is noticeably slower, and i'm sticking close to a chair or sofa. my leg pain has been better with the help of getting back on the fentanyl patch, but due to the exhaustion, i'm having to rely on my cane just as much. (if it's not one thing, it's another!)

and of course my appointment was scheduled in the afternoon, not to mention that getting to the neurology department from the car can be an Olympic feat. (that hospital seriously needs some type of urban planner to redo the parking system.) luckily, they do offer a wheelchair service when you come through the main entrance (that is, if you want to go head to head with the geriatric department.) but since the recent "fued" with the MS clinic folks, i've refused to use it. i know, i know the only person i'm hurting is myself. but a girl's got to keep SOME pride, especially if she's already using a cane that doesn't match her outfit on a daily basis. by the time we got to the 2nd floor, i was exhausted and uncomfortable, not to mention incredibly anxious. (i was had been tempted to take a sedative prior to the trip, but being conscious seemed to be an integral component to our visit.)

dr. carl was very punctual (that won him some points in my book- being on time is a bit of a pet peeve), and overwhelmingly polite. almost too polite. he was clearly nervous (which wasn't helping my nerves) but then i thought, wait, why was he the nervous one? he's supposed to be the doctor that was "trained by the best MS neurologists in the world" (remember, he did stress the world bit.) he was choosing his words incredibly carefully, and seemed to stumble around quite a bit before coming to a point. in fact, he asked "Am I making any sense?" at least twice. i'm not quite sure he should be asking me that question. but before we got too far in conversation alone, he performed a a complete neurological exam.

ok, i'm sorry but i have to laugh at the fact these are supposed to be "complete" neurological exams. the laugh isn't directed towards dr. carl, not at all. it's about how the exam sounds so comprehensive and reputable, when in practice it consists of the following. walking on your tip toes (think DUI-style), sticking out your tongue, smiling, a pencil, a flashlight in your eyes, and a safety pin. i'm sure it's very revealing to a medical professional, but watching as an innocent bystander (or participant!) yields absolutely nothing. the safety pin part is an practically a medieval touch!

with that out of the way, the game of 20 questions began. we talked for an HOUR. part of that could be attributed to my MS induced speech impediments.( i've found that when i'm nervous, or even slightly anxious, they tend to flare up.) i was slurring my words left and right, stuttering completely gracelessly, frequently forgot my place in our conversation, and struggled for the proper words. so i'll knock off 15 minutes, but that still leaves us with 45 minutes- in doctor time, that's almost an entire week! i mean, to get that amount of time exclusively with your physician is almost unheard of!!

i settled back into the extremely hard plastic exam room chairs and looked at him expectantly. he had wanted to explain the items he had "flagged" in his review of my records (this was when he first inserted the "250 page" comment. good for you buddy, isn't that your job??!!) but he cautioned me to "not get upset" and to "let him explain first." he began thumbing through a print out of pages with a crazed look in his eye. (he couldn't find the page, and we sat there in awkward silence for a moment.) ok, i was starting to get nervous. i looked at dad, trying to establish a telepathic connection in advance of this bombshell. he took a deep breath and said... "now that i have spoken to you, and gotten a sense of your history, i think your doctors were correct in their original diagnosis."

silence. i was waiting for the "but"... it didn't come. i looked at Dad. he looked at me. we looked at dr. carl. silence. finally dad spoke and said what i was thinking- "so... does this mean you do think she has MS?" "yes." are you kidding me? all of this drama? all of my incessant worrying? going through the WHOLE story yet again, and all i get is a "yes"? i was primed for battle. i was ready to get demanding, snappy and hysterical. i was there with my dad to defend my honor!

the "but" did finally come- just not in the context we were expecting. apparently there must have been some miscommunication (shocking) between dr. carl and i. he seemed to think i was under the impression i had the worst case of MS ever known to man (err, woman), that i was demanding to be treated aggressively and to pull out all the stops. that isn't the case at all. well, obviously i want a doctor to pull out all the stops, but i don't want to risk my life!! i had gone on Tysabri b/c Betaseron wasn't working, and when my body reacted badly to the Tysabri, we had no other choice but to go off of the treatment. therefore, i needed a new treatment plan. it was actually quite simple in my head. so his whole approach to this was to explain to me he WHY didn't think it was necessary to try other extreme, aggressive (ie risky, toxic) options. AUGH!?!?!?! communication is so overrated.

when we got to this part, he did end up giving me on some info that was new and good to know. therefore it wasn't a complete waste of time. apparently there is a basic theory to MS diagnosis. when someone is diagnosed with MS at an older age, the disease is assumed to advance at a slower course. but when someone is diagnosed with MS at a young age (this is the category i fall into), they expect the disease to progress to a moderate degree of disability in the future. therefore, the option to choose more aggressive treatment is most likely going to come up at that point. since my MS has not progressed rapidly, so far (gee thank you for clarifying that), we should hold out on aggressive treatment and stick to the interferon, disease-modifying injections. (we don't want to use up all our options in the beginning- that's how i took it.) it actually makes a lot of sense-looking at it from a purely education point of view, like they are stats about a person other than myself. it's easier for digest if i take the emotion out of the equation.

so, i still have MS. i can't tell if i was truly thankful for the diagnosis, or i was confusing the emotion with plain ol' relief. it's funny (if by "funny" you mean sick and twisted) to think i would be truly thankful for this disease. but when i weigh it against yet another plight into the vast unknown of medical mystery, i'd rather to stick to what i have now. so when it comes time to do the annual "i'm thankful for..." game at the dinner table tomorrow, i know one thing that will automatically qualify- that this whole MS controversy is OVER WITH.

at least until another doctor comes along...

remember- you can view these postings directly on kitkat chat's blog: http://meggerv2.blogspot.com/

eye on the prize

i have not had a glass, a drop, a sip of wine since meredith was here in june. even then, i threw it up an hour later, so i technically, it doesn't count. with that one out, it has actually been since february. and that was only 1/2 a glass. so technically, that doesn't count either. which brings me to... god, i can't even remember when. I REALLY MISS MY GLASS OF VINHO VERDE WITH DINNER. (or with lunch, or maybe breakfast depending on the hour. oh, and with a movie. or just the news.)

just for the record, i do understand this is quite petty and possibly borderline materialistic, but is it really too much to ask? can't a girl have a drink? i'd even throw in the MS card and the shit i have to put up with on a daily basis, and my case gets even stronger. i'm not even pleading for the hard liquor. i just want a simple glass of pinot grigio- hell, i'd even take a chardonnay at this point (as long as it's not oak-ey, i do have my principles ya know.) and that really shows i'm desperate.

you probably assume i can't drink because of my endless medications, and that i am being a good patient by obeying the prescription labels. um, no. i never read those things anyway (i recommend you do the same)- besides, they can really mess with your head. next thing you know, you'll be convinced the red spot on your left pinky is morphing into a fatal side effect. besides, i have been drinking my way through meds and IVs the past 3 years. mom even asked my doctors (repeatedly) if i should still be drinking- they all laughed and said they didn't see why not. (love them!) the real reason i'm not drinking is very simple. i throw up. we're not talking get a little nauseous, or get a slight headache. oh, no. we're talking about half an hour later i just start vomiting.

it started with red wine in 2005- i was convinced it was just the particular "label" and i worked my way thru others. i threw up each time. candy gently suggested i stop searching for the elusive vomit-free label after too many evenings spent with me on the bathroom floor. so, as much as it pained me to give up my winter unwinding habit, i do have a special place in my heart for michelob ultra (i know, i know, totally lame and girly.) but get this- the same damn thing happened! i tried a bottle of mich lite (patty & i? we go way back with this...) and again, it failed me. i even attempted a draft miller lite at ragtime one night- baaaaaad idea.

at this point, i was down red wine and beer. (not the best odds.) but since i'm at that age in life where everyone in the world has decided to get married, i've been through few open bars in my time. i've always been a fan of gin & tonic (thank you ellie) so i was relieved i had a stand by. background: shannon and i made a road trip over thanksgiving 2 years ago (wow, was it that long ago?!) to chapel hill- it was liz's wedding. when the time came for the reception, and i calmly ordered the chosen drink. no pressure, right? i got it down ok, and thought i was in the clear. but the next morning, when mom & dad came to pick me up, and we had to stop on the side of the highway for me to puke into the weeds!

all of this was very tumultuous, but at least i had my white wine, which is truly the love of my life. we have spent many nights on the rooftop of my building and thru episodes of desperate housewives at candy's apt across the hall. for a while, our relationship was stable- we even made it through the worst of the worst (last year around this time when i couldn't even brush my own teeth or walk to the bathroom.) but suddenly, around christmas/new years, i noticed a change. i was having to force the wine down my throat- never has this happened to me in my LIFE of drinking wine. (which of course mom, was AFTER i turned 21.) and then it happened- it was during our yearly girls weekend on the cape, which is always filled with vinho verde and pinot grigio. during a game of scrabble (another hot item at during our weekends) i wasn't able to drink anymore. the nausea was constant.

so now you can see how traumatic this experience has been, and understand how desperately i miss my wine. but there is hope, and i have somewhat of an experiment. since i am off tysabri, i am curious if my system will be able to stomach a gentle wine. (the doctors theorize that the med was so toxic that it was wreaking havoc upon my digestive system- perhaps in combination with one of the other drugs.) i plan to test this over Thanksgiving, but very cautiously- i don't want to ruin all that good food by heaving it into the toilet. but in the meantime, i'll just keep on yearning for wine. by the way- thanks for letting me vent. i feel much better now.

remember, you can access my blog directly by going to http://meggerv2.blogspot.com

does MS attract MS?

it always amuses me when people find out i have MS because i can predict almost 99% what their reaction will be. "Oh, My hairdresser's cousin has MS- you two should meet!" or "You have MS? Have you met Susie yet?" (like there is only 1 Susie in the world.) trust me, i'm not being a hater- i know that everyone has the best of intentions, but does it mean we have to be friends just because we both have MS? look at it this way- MS is just a characteristic like, say, having blue eyes. "OMG my baby sister has blue eyes- you are going to be the BEST of friends." we're still people, and the laws of chemistry are still going to apply. there are beautiful, caring, brilliant, hysterical blond bombshells that have MS (aw, what a compliment- sounds like me!) and there are ugly, dull, morons that have MS. but don't worry, i still smile nicely and make simple conversation about poor little Susie and her various ailments.

there is another aspect of MS to MS friendships that i believe is more common. i think that the aversion to meeting and befriending others with MS isn't because we are hermits, but has more to do with admitting our disability. it is one thing to understand you have the disease, and live your life around/with it. but it is quite another to be paired with someone that has MS- you realize, wow, i really have this. it serves has a reminder- and not necessarily one you want to be reminded of. for a long time, i steered clear of associating with the MS Support Group crowd that my parents frequent- for this exact reason. i didn't want to sit in a room with other disabled, depressed people complaining about their various challenges. it's depressing!! i don't want to be reminded of that, or worse, have a visual encounter of where my life could be in 10 years.


as i've written about before, Lewisburg is a small town. no, really- SMALL. i thought i knew what small was, considering i grew up in High Point, NC. there were about 35,000 people there. but Lewisburg? we're talking 5,600 people small. and i am quickly coming to understand that being this small means that everyone knows everyone else- and intimately, too. hell- they have even heard of me, and i've just started making public appearances this summer! when mom and i moved here in march, mom began adjusting into her new life- making small talk with the neighbors, walking the dog, working out at the bucknell fitness center. apparently mom's first topic of conversation has to do with her daughter, me. it's like she word vomits my situation immediately "oh by the way my daughter has MS"- so she can get it over with and have it out in the open.

she began to hear of a younger woman that worked at FBC who had been recently diagnosed and was having somewhat of a difficult time. mom urged me to meet her, but i wasnt' interested nor did i know if she even wanted to be confronted by yet another person. there was no way i was going to make her feel better in the state that i was in- barely walking, exhausted constantly, in wicked bad moods from adjusting to my "new life", etc. yeah, i'd be a bucket of joy for her! but every time i met someone with my mother, they would bring this woman up! i mean, they seriously wanted us to be friends. (i guess i could take that as a compliment, they must think i ROCK! either that or she's super hard up for female companionment!!) finally, a couple months ago, mom was talking to some women after church, and before i knew it, mom was in my face dragging a woman behind her and said, "Meg. Jana. Meg has MS. So does Jana." omg i was a bit mortified. i think she was too- or maybe caught off guard was the better word to describe it.

we only had 5 or 10 mins to chat, as she was off to a board meeting, but in that 10 mins we wound up talking nonstop. about our specific ailments, questions we have, our "story" of ms- but we barely scratched the surface. on the ride home, i was telling mom how much i liked her, and it would be good to know someone around my age that is going through this. but at the same time, i don't know where is in her life right now- how much help does she want, how much should i butt in, etc. from past experience, i know that i have turned down a lot of offers of help until i was ready. plus- i didn't know her too well, i wouldn't even know how to help her at the moment.

we've since emailed and seen each other before/after church, and i really like her. i know i should like a total nerd, but i don't have many friends in the area. there is amy, a cool chick that heads up the Neighbors & Newcomers, who is from charlotte and has 2 young boys. then there is debra, my next door neighbor, who has 3 young kids. as much as i adore both of those women, their lives are in a different place than mine right now, and they have priorities and lifestyles that just don't mesh with mine. although i love our coffee talks! but now i have jana- and it's great on both levels. yes, she does have MS, so i have a person i can vent to who really knows what is going on. AND she's younger, and single, and i'm hoping can help me ease out into this town, meet new people and have some new experiences.

we went out to lunch on wednesday to a little cafe inside the Pennsylvania House outlet store by the Library. (i was psyched b/c i have NEVER gone out to lunch in Lburg- except once with ML- AND i was going to have some girl talk time!) jana came and picked me up (i'm still not driving, but i'm going to take the car for some test drives this weekend), and from the time we got in the car, to when she drove me home, we talked nonstop. it's SO comfortable to talk to someone who REALLY KNOWS. don't get me wrong- all my friends and family let me vent and cry and complain. but it was refreshing to talk to someone that is sharing many of my experiences. and we could ask each other questions and advice, because what we are going through is scary. it's LIFE long. and we've got to learn to live with it- but doing that on your own, by yourself, is very hard. trust me, been there, done that, got the tshirt.

this post wasn't wildly funny or extremely enlightening, but i just wanted to share that i've made another friend. and i don't care that she has MS.

remember- you can view these postings directly on kitkat chat's blog: http://meggerv2.blogspot.com/

twisted over you...

does anyone remember that song? keith sweat? twisted? riding back and forth to tennis practice in the yellow volvo blasting his CD? (hmmm, maybe that last one was just me.) i know everyone would prefer that i sing this song out loud to jog your memory, but unfortunately the only people around are the Amish- and i don't think they'd appreciate my skillz.

yep, i got twisted this morning, but it definitely wasn't over love. i went to my first yoga class in over a year- above cherry alley cafe (a local coffee shop). i emailed back/forth with the instructor over the past couple months- i wanted to make sure he was briefed on my limitations. i didn't want him to think i was a total amateur or totally lazy. it clearly took me awhile to make it to a class. i was nervous- i felt like mom was dropping me off for my first day at school!

it felt SO GOOD to be back in the yoga studio... the soothing music, the empty space, the simple stretching. there is something about yoga that immediately calms you- it's amazing how clear your head can feel when you don't have 8 million thoughts competing for your undivided attention. i snagged a position near the wall (i knew i'd be leaning against it at some point) and unrolled my mat. the session lasted 1 hour and 15 minutes, but i had to duck out early to get to a urologist appt in danville @ geisinger (i think we should turn this into a game- every time i mention "geisinger", you guys should... breakdance.)

i wasn't able to keep up with the instructor (or the class) for a significant portion of the session, even with modified versions of the various positions. i was pretty disappointed in myself, which i recognize (rationally) as a mental issue. i really have trouble adjusting my mindset to fit my current abilities- ie instead of being upset with myself for not keeping up with the class, i should be proud of myself for getting through over 50% of the positions! i think everyone has this problem in various aspects of their life... so, we have that in common. put it on your list for 2008 new years resolutions.

the stretching felt amazing... it's so hard to get my body to move, but if i take the time to force my arms or my legs slowly, then i usually succeed. i wound up cutting out earlier than planned- the instructor got into some advanced positions and i just couldn't cut it. (ok, rational thinking, mental mindset- i recognized that my body had enough, and stopped before i crossed that line.)

mom wasn't due to pick me up for a few minutes, so i headed downstairs to the coffee shop to snag a latte (with soy milk- augh, it's so hard to remember NO DAIRY!) i dropped my mat and bag on an empty table, and looked up to see my friend Ilene sitting across the room. Ilene is awesome- she is one of the first people I met here, and we met through my mom. mom goes to the MS Support Group in town (i avoid those things) and Ilene coordinates all the meetings and content, etc. from day 1 she told mom she would love to talk to me, anytime, about MS or just about life. she lived in NYC for a number of years, had this high powered hot shot job, big career woman. but when she was diagnosed, a lot of that changed. she and her husband live in an amazing house out in the country- the house itself is beautiful (both inside and out) but the standout feature is the view. almost 75% of the house has huge, wide paneled windows that look out over the rolling hills and fields that is central PA. if i had a view like that, it would be hard to not feel inspired every single day.

anyway, i chatted with Ilene for a bit, and she told me that she goes to a yoga class at Evan's Community Center (Evan is the hospital here in Lewisburg) that is actually chair yoga. she said it's not as aggressive, and the women that run the programs are incredibly supportive. she is going to check with the coordinator and see if she can bring a guest next friday (that would be me). i confessed that the class this morning was a bit much for me to handle, so chair yoga sounds like a great first step back into the world of yoga. alright gang, that's my life in a box for today.

peace & lattes!

where does faith fit in?

a good friend and i were recently emailing about the struggles we each face when it comes to the topic of religion. (btw, you know it's a real friend when you can talk about something so private and indescribable!) we both confessed that we have been disgusted in the past by the hypocrisy of so many when it comes to faith, and turned off to the whole idea altogether when pressured " by "in your face" religious fanatics. it made me stop and think about where i am in my personal journey, and how faith affects my daily life.

it's not infrequent to hear testimonials and revelations of faith that piggyback onto a chronic illness or a devastating circumstance. perhaps "piggyback" is the wrong word, b/c i don't mean for it to have a negative connotation. i think it's only natural to ponder your own mortality when faced with the news of a loss of a loved one, or an unexplainable illness. i recognize that there are many levels of faith, none being "better" or "right" if compared to another. there is no guidebook, no God for Dummies version- even if there was, your faith is personal, it's not based on the actions or beliefs of others. i truly believe that faith can take any form you choose, its presence morphing itself into an acceptable sidekick in your walk of life. but i can only speak from my own experience...

when i was a little girl, i believed in unicorns, fairies, the tooth fairy, a handsome prince, toys that came to life, animals that talked, santa claus. of course, now that i'm old (and bitter- ha ha), i've had my heart broken, been betrayed by friends, mislead by those i trusted, been disappointed in others- long story short, i have a critical view and defensive edge to everything i encounter. i'm not so good with things that cannot be explained- i prefer to call its bluff every time. i want reasons, i want facts, i want plans (i want backup plans), i want to know how, why and when. i'm stubborn as hell. (does this sound familiar to anyone?)

so being faced with all those daunting health obstacles and all that jazz of the last few years, i found myself having to digest and accept a life-long challenge.life-long. that's forever- how do you even wrap your head around that?! suddenly, i couldn't answer any of the hows, whys, whens that i demanded. i was going insane for 3 years- i looked everywhere, i talked to anyone who would listen, i read any book i could get my hands on, i googled the hell out of it, i analyzed every symptom, trying to manipulate its cause and effect. but the more i tried to change it, the more i tried to deny its existence, my faith started to take over. it was minimal at first, i don't think i was even aware, and the takeover was gradual. but slowly, a sense of calm, and a feeling of peace crept into my heart. and as my disease grew, taking over so many aspects of my personal life, my faith strengthened right along with it- maybe even more.

you might find this odd- shouldn't i be angry with God? i am a good person, i respect others, i go to church occasionally, i pray for loved ones each night. truly God was punishing me, no? if i were a true Christian, wouldn't God take my pain away? but instead i see the opposite- i believe that because I am a Christian, God gave me this pain. i like to believe that because i have beared this disease, another child or woman will not have to. there is be a greater good that is coming out of this time in my life, and i am leading the way without knowing the directions. so while i wait to understand and see that, i try to focus on myself, and my actions, and make sure they live up to the ideals i hold so close.

yesterday (sunday) was a memorable day for our family, and a cheers! to the life we are beginning to create in this new town. yesterday morning, my parents and i were officially accepted by the elders of First Presbyterian Church (FBC) in lewisburg, and were introduced to the congregation during the morning's worship service. standing up by the pulpit, with 2 other new member families, i was almost bursting with pride. you hear people use this phrase, especially parents when it comes to their childrens' achievements, but at that moment, i truly understood how they must feel. it means so much to me that my parents took such a huge step in their personal faith to get to that moment. i knew how nervous my mother was to share her feelings publicly on faith, and i knew my father felt conflicted when it came down to joining the church. but they did it, and we all stood in front of such love and acceptance- and at that moment, i felt so safe, and so content. it was as if someone was patting me on my back, saying "you were meant to do this."

after worship service, we were ushered down to the parlor, where we were to meet other members of the church. we were positioned in a receiving line beside the barlett family, and nicole & chris (a brother/sister- nicole has the most adorable, and happy, baby girl!)- i planted myself in a huge armchair (as i *this close* to the wall of exhaustion!). endless members of the church waited in line to shake our hands, or to give us a welcome hug. i was astounded. i have never experienced anything like it- i felt so welcomed, and so genuinely cared for, by people who only the hour before, didn't even know i existed! (for a moment, i felt like i was getting married!!)

but let me back up a few months, share some of the hows and whys of the story. moving has a huge impact on your life. suddenly you are in a strange town, you know no one, and there is no social outlet or circle for which to turn. until this has happened to you, it is difficult to comprehend how achingly lonely it can feel. my parents and i have been lucky to have each other during this time, especially since the norm is you are usually moving away from family as you age, and not back towards each other. over the course of the spring, mom and i frequently expressed to each other that we wanted to find a church we could call home, but this was difficult to do since i was incapacitated in many ways throughout those months. i wasn't physically capable to walk up the steps into the sanctuaries, or have the energy to sit in the pews for an hour at a time. but the summer months came, and with it i grew stronger, and our "church hop 2007" tour began. (if you have ever visited us, you'll remember that we didn't have to go far in this tour- the churches are literally steps from each other. i affectionately call the area "church square.")

my brother and i were raised presbyterian, and my parents attended the same church throughout most of our childhood. so the local FBC seemed a natural first step. after the visit, we both walked away with a strong impression of faith and a true compassion from the people of the church. but this was our first foray into Lewisburbug's religious sector, and we wanted to be open to other possibilities. so we gave it the good ol' college try, attending both of the Methodist churches, a Lutheran church, an Episcopalian church.... but we kept coming back to FBC. ironically enough, each time we would encounter another connection- the piano tuner's wife, neighbors down the street, a coworker of dad's. the sermons were always relevant, and the mindset of the preacher was so true to life- real life.

this is a natural foray into the whole point of this posting. as i type this, my right hand is partially numb, but has included the next step of prickly, painful "pins & needles" that is supposed to come AFTER the numbness. (clearly my body didn't get the memo.) it's an odd sensation to be typing, but forcing my fingers into positions that i know mentally will move the keys. this is where faith fits in- it's everywhere. it's in everything we do, everything we say, everything we work for. for me especially, i don't know how much my life will change as the effects of my MS grows. i don't know if i'll be in a wheelchair, or if i will lose the use of my hands, or if my vision will turn against me. so for me, the only way I can move forward, both knowing and accepting my condition, is through a strong foundation of beliefs. and this is how faith fits in- it envelopes us in comfort and courage to move forward in our lives without knowing every detail of every step along the way.

i want to wrap up this post with a very simple, yet applicable, prayer from the author, Richard Morgan, from his novel Settling In: My First Year in a Retirement Community,

Keeper of our days,
if only we can risk the unknown
and not cling to the familiar,
we will learn of your grace and strength.

Amen.

On The Lighter Side

given the recent emotional rollercoaster ride, i thought i'd highlight how Lady Gwendolyn & Madeline are helping me cope with all the drama. (which is mainly in the form of moral support.) introducing,....

A Day in the Life of the Furry & Fabulous

9am- wakeup, yawwwwn

10:30am- nap time!

12noon- ahhhhhhhh, get comfy

1:15pm- ewww, your ears are like, totally dirty

3pm- dude, give a sister some space

4:25- wait, where are my paws?

5pm- nap time!

6:10pm- warm up in the patch of sunlight

7:45- snuggle with meg for a law & order marathon

famous last words

"i just want to talk. no more tests, no more MRIs. just talk- that's all."

i don't think i have ever heard more famous last words in my 27 years of being on this planet. (well, 24 years if you don't count the "ma ma, da da" phase of a toddler.) the source of this is a neurologist, dr. h-something (honest, i can't pronounce his last name, i'm not being dismissive. hence, i call him dr. Carl) at geisinger's MS clinic. it should ring a bell- i'm frequently at the clinic and have referred to it in earlier postings. dr. Carl became my doctor almost out of default- one of those chain of events things. here are those supporting details...

when i moved to lewisburg back in march, we set about trying to find a neurologist who specialized in ms. we found out that geisinger had an MS clinic, so assuming they'd have an MS neurologist, we made an appt. my first doctor there was an older gentleman who has been in the department almost all of his practicing years. unfortunately, he didn't prescribe (nor approve of) Tysabri as treatment, and his sub-specialty was Parkinson's and strokes. apparently the clinic's longtime MS neuro had retired recently, and they were still recruiting for the position.

therefore, i wound up in harrisburg, with an MS neuro that not only prescribed Tysabri, but also had MS herself. it was a good enough fit, but after a few months of the lewisburg to harrisburg commute for the 3-4 hour treatment became way too taxing for my physical condition. if you read this post often, you will remember that it was around this time the ms clinic @ geisinger was lobbying for using Tysabri at its infusion center. long story short, i came on board as patient #1, and the prescribing doctor was the newbie, dr. Carl. i asked at least twice if this doctor was going to give me an exam, but was told he wound eventually, and everything was good to go.

when i was taken off Tysabri, dr. Carl wanted to rule out any additional conditions that were making my MS worse, especially Lyme's disease. (apparently blood tests aren't always reliable or conclusive for Lyme's, so the spinal fluid is used as a more reliable marker.) i don't need to go into further details on how horrific the spinal tap experience was, but all in all, the tests came back negative for Lyme's, and no MS specific proteins were was present. this isn't unusual- it is a diagnositc procedure, but presence of the fluid in question can't be used definitively to confirm or exclude MS. it is usually done in cases where diagnosis is unusually difficult and evasive. like i mentioned in the beginning of our "supporting details" section, how i wound up in dr. Carl's care was solely by paperwork dictation.

fast forward to today. while i am "drying out" from Tysabri, i am taking monthly "pulse" treatments of Solu-Medrol to help control my symptoms and help to keep me moving. (for lack of a better phrase.) today was the magic day. as i was led back to "my room" (the nurse affectionately phrased it that), she told me that dr. Carl would be stopping by, and would like to have a word. i had been expecting this, but not today. i wasn't mentally prepared, i was tired from the long weekend and already on edge from a blasting migraine. he came in while we were waiting for the IV team (my veins can be tricky), and asked the usual bullshit questions that some doctors seem to mistake for casual conversation. (key word is most dr. dilling!)

"how are you guys today? holding up okay?" i could have answered with "funny you asked, i was abducted by aliens who performed a partial lobotomy with no sedating medication." and he would have continued with the next question. but get real- i'm an MS patient coming into his office for a course of cortisteroids to be blasted intravaenously into my body. clearly i'm not feeling my best. the conversation went downhill from there, which leads me back to the title of this posting. dr. Carl explained that he was not convinced of MS presence, due to the spinal tap results, and wants to sit down with me for a couple hours to go through his "method" of diagnosis. he then explained that he was fortunate enough to train with the best neurologists in the world, and the process is a tried and true practice that many neuros use.

my whole body began to go on "alert" mode. my mind was racing, my heart was pounding... to be honest, i don't know which was bubbling to the surface- my anger or my hurt feelings. not again, not again. i've spent years fighting for myself, fighting literally for my life to resemble some sort of normalcy. and just when i feel safe with a doctor or nurse who i think is going to help me, the rug is pulled out from beneath me. those years swirled in my head- all the disappointment, pain, disbelief, frustration, denial, sacrifices.

there have been so many doctors to come and go before him, and they were all as different as they could be from one another. but they had one thing in common- there was no doubt that i have MS. don't get me wrong- each may have varied on how severe or mild they concurred my case was, but there was no doubt of its presence. i should know, in addition to my own denial, i had to also calm the fears and address the denial of my parents. between the whole family, i have had at least 5 "second opinions."

the reason there are so many of these doctors isn't that i'm schizophrenic, it is that an MS diagnosis can be tricky. there's not a simple blood test, or a random CT scan, sometimes other conditions can even mimic or hide aspects of the disease. the game is best (and most reliably) played by ruling out the encyclopedia britannica of other possibilities- sort of like that stupid chair game you played in preschool. wait for it, wait for it.... musical chairs, that's it! when the music stops everyone makes a mad dash to a tiny seat. i hated that game- after so many elbows in the face and shoves to the side, i frankly didn't give a damn if my ass was on a chair or on the carpet.

in addition, each player is going to have their own "game day" mentalities- some are aggressive with cortisteroid treatments, other prefer the disease modifying injections. some suggest physical and occupational therapy, others push towards an alternative/holistic approach. but regardless, a combination of the following lead you to an MS diagnosis:

- your medical history (esp. evidence of past signs and symptoms)
- a thorough neurological exam (this part seems stuck in the 50's- you squeeze his fingers, follow the pencil, are poked by safety pins all over your body, walk on your tip toes, bend over and touch your toes, put little pegs back in their appropriate wooden holes, have a light shined in your eye... need i go on?)
- MRIs (magnetic resonance imaging; think being pushed into a tiny tunnel- a claustrophobic's worst nightmare)
- evoked potentials (studies that measure the response of your CNS to specific stimulation- )

long story short, i don't troll the country looking for doctors who necessarily agree with my outlook- it's a combination of being referred to doctors that have more expertise in dealing with the worst of my specific symptoms AND establishing a confidential rapport, feeling like that doctor is listening to my concerns. so far, the only interaction dr. Carl has had with me is 20 minutes during a spinal tap, and we know what a disaster that was. actually, that is a prime example- if this doctor knew me at all, he would have known that the test was not only unnecessary, but cruel to put me through.

he was staring at me, nodding uncomfortably to make up for my lack of response. the room had become 30 degrees, and all the air seemed to have been sucked out of my lungs. i was trying desperately not to cry, thank god i had my celebrity sunglasses on. the light is still torturing me, altho recent eyedrops from dr. beautiful are helping. (again, another thing dr. Carl doesn't know about his patient- the her scarring on the optic nerve from a past case of optic neuritis. ) i managed to stammer out that moving to a different state shouldn't require a completely new confirmation of diagnosis, does he have a habit of doing this to all his new patients?

dr. carl: "while you aren't new to this, you are new to me, and i need to know everything about your condition- both past and present. i need to be completely sure that you have MS before i introduce any medication that has potentially harmful and serious side effects."

tears were starting to prick the insides of my eyeball, i could almost feel the tear slice through my cornea. (kim- do tears go through your cornea?) in a small voice, my confidence shrinking by the second, i reminded him that he has copies of all my records. they should show all of the tests that had been run, and all of the results that point back to MS. if he is looking for a magic cure, or some mystery diagnosis, he isn't going to find it. it's just not fair or necessary to ask me to go through all of this again. i can't do it anymore. i think it is only fair that he actually reads those records before he comes to me with assumptions.

dr. carl: "like i said, i have my own methods that were learned by world renowned ms specialists, and all i'm asking is for 2 hours in a few weeks to go over all of those details."

[note he did not say he would or has read the records.] with the last of my strength, i stated again the doctors who have confirmed the diagnosis- an original neuro that diagnosed the condition, 2 docs @ NIH who confirmed 2nd opinions, a clinical study performed @ NIH over a 3 month period, a nationally known neuro in VA who treated me over 2 years, and a neuro at georgetown- and those are just the ones that come to mind!! with my lip trembling and my hands twisting the cuffs of my sweater into sweaty knots, i just nodded defeatedly. i'm not sure if i can go through this again, i told him honestly. i shouldn't have to.

dr. carl: "well, i'll let you guys hash it over, and if you want to schedule an appt to move forward, just call and let us know your decision. i just want to talk. no more tests, no more MRIs. just talk- that's all."

he got up and left the room, and i turned to face the wall. the tears were flowing quickly now, and i didn't want to give that man the satisfaction of seeing them. since when do doctors not want to perform tests- that statement was practically a joke. i felt utterly defeated. where now? what now? i'm so tired- so, so tired. i cried and cried on the phone to elle this afternoon- i think all the tears i struggled to hold in throughout the SoluMedrol IV burst out. i don't have any fight left in me. this is my life- i'm not just some lab rat who displays unusual results and might make an interesting study to put his name on the neurological map. but you know what? maybe it's not even about me anymore. maybe my life has become an evergrowing charts of lab results, CT scans, MRIs, Xrays, evaluation notes, eye charts, and brain waves that live in a 3 inch stack in the corner of a medical storage facility.

my face time with dr. Carl was at the most 10 minutes. it's kind of hard to imagine how much could happen in 10 minutes. but in only 10 minutes, he destroyed years worth of self confidence and assertion i have had to learn to survive this hell. in only 10 minutes, he placed seeds of doubt in the very existence of challenges i face every single day. in only 10 minutes, my mother was given yet another false hope in a simple answer, a magic cure. in only 10 minutes, he eroded the acceptance of this disease that had taken hours of tearful conversations with the best of friends, not to mention countless dollars in therapy, to achieve.

but worst of all, in only 10 minutes i was back in a cold, sterile doctor's office in VA- a naive 24-year-old trying unsuccessfully to wrap the thin patient robe tightly around herself, shivering against the chill of the steel exam table, fretting over roommate squabbles and a shallow breakup while she waited for a neurologist to reveal a life changing diagnosis on a lightbox.